Life with a T1D Toddler..... Any advice welcome

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Hello!  I am the mom of Lainey who was diagnosed 12/29/11 at the age of 19 months.  We (mom, dad, sister 11 years old and sister 8 years old) have spent the past 14 months learning to cope with our new life.  We've made friends with a few T1D families as well as connected with our local JDRF branch.  Here are a few questions for the forum:

  • Do any other moms work full time?  I currently work full time and took a slight cut in pay to switch to a more flexible position.  Seems most of the moms I meet work pt or stay home.
  • How do other parents deal with the round the clock checks?  Every night we follow the same routine - test, shots (Lantus and Humalog if needed) & snack between 8/9pm, stay up till 11pm/midnight to check (then correct or wake up to give snack), nap for 2-3 hours, get up and test at 2/3am, name for 2-3 hours then get up at 5:30am.  Trying to function throughout the day is tough when you feel like your sleep deprived brain is mush!  I am so scared I will mix up meds or make wrong calculations all due to sleep deprivation!!
  • Does anyone else feel like they are loosing  friends in their life?  I am finding friends and family scared to death to be left alone with a diabetic toddler. 
  • A 2 year old is bad enough - but a diabetic toddler has been a nightmare.  We have 2 older girls and we find dealing with this one has left us totally spent and exhausted.
  • Has anyone had issues with their child being totally asymptomatic?  Our Lainey can be happily sitting in group or playing quietly and when checked she is 450!  The times she seems to be most cranky is when she is near her target of 150!
  • Is anyone else frustrated that most programs for T1D kids are for ages 6+?  The toddler population is totally ignored.  Great - I get to wait 4 MORE YEARS before I can get weekend respite care or let her go to a camp of be an Ambassador???
  • Anyone else stuck with medical daycare?  Delaware law prohibits our child from attending any sort of care that does not include a RN or LPN etc....  So we have to go to a medical daycare.  Why does my child who needs to be checked 2-3 times per day have to be forced into a facility where there are kids who are on respirators or are severely autistic or have serious development disabilities?  How will she be prepared for preschool when most of her peers cannot even walk or breathe unassisted (though it makes me extremely appreciative of what these other parents have to deal with each and every day)?

Sorry but after a year I was hoping life would get easier!  Ooh - last one - does anyone else hear my favorite phrase when you call your Endo to express concern that your child's average is close to 300, "Well, she is a Toddler and the little ones are tough to treat"!!???

Thanks for listening and any advice is appreciated.  I am just beyond exhausted and tired of just trying to make it through day by day.  I didn't mention the hubby is a police officer who works rotating shifts and daughter #2 is a severely Dyslexic (like we needed another challenge in our lives).

   Thanks!

Jen

 

 

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hi Jen, wow you have a lot going on.  I am so glad you are in contact with your JDRF chapter, please use them as a resource.  I would also recommend finding as many professional and non professional resources as you can.   I included some useful links for you:

social networking site that teens & parents can use to find others in the diabetes community (besides Type One Nation):

http://tudiabetes.com/

Penpals

http://kids.jdrf.org

Pumps

juvenation.org/.../default.aspx

http://insulin-pumpers.org

www.childrenwithdiabetes.com/pumps

http://www.kidsrpumping.com  

School Laws

www.ed.gov/.../disability.html

Special Education Law & Advocacy  

http://www.wrightslaw.com

I am not a mom nor do I have a toddler with diabetes, but I have some thoughts on some of your bullets

"round-the clock checks"  what's going on overnight?  is she consistently high or low? are you finding that you are correcting overnight?  The overnights should eventually be more predictable, especially if she's been honeymooning.  I hope you have a good CDE that can work with the right overnight basal or long acting night time snack to make both of your lives better.  Sometimes splitting Lantus or switching to a morning shot can help too.  You both need your sleep.

"asymptomatic".  If your daughter's average is 300, she will feel hypoglycemic (similar to an anxiety attack) at 150 for sure.  The body gets used to the average, changes from the average will tend to make for symptoms.  It's likely that's why she isn't complaining at 450.  A very hyperglycemic event kind of feels like the flu, but it makes me feel thick.  I don't know many toddlers that could verbalize that anyway.

doctors are rushed and tend to be smart with marginal personalities.  I always get along better with trainers and nurses/CDE's, they tend to be more personable and tend to have more time for you.

loss of friends and family.  Please don't take this the wrong way I do not mean to insult you, but you sound frantic.  If you are making everything in your daughters life an emergency your family and friends probably will feel that, and be to scared to be around her.  I don't care about your friends, I care about your daughter.  She's feeling what you are feeling too.  Your anxiety and fears will lead whatever you are saying to her, her siblings, and to your friends and family.  You have to take care of yourself and make it as much of a priority as the care of your daughter, otherwise, they will be your challenges, instead of your babies.

Talk about it, do yoga, watch your diet, get exercise, and do something good for yourself every single day.

Diabetes doesn't ever get easier.  It does become more routine.  You are not in this alone.  Please stay active here and enlist the help of others.  

good luck, and cheers

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Hi Jen.  It sounds like one of your main challenges is not being able to sleep at night.  I'm not sure if it would work logistically, but you may be able to look into a continuous glucose monitor (CGM).  If you can get Lainey to keep it on, it will monitor her glucose all the time.  You can set alerts on it so that it will wake you up when she gets above or below limits that you set.  That would let you sleep all night most of the time.  I recently got my first CGM, the Dexcom G4 and I'd recommend it in your case because the receiver has a pretty long range.  The accuracy is also good.  It is usually very close to my regular meter.

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Both Joe and Ebgineer gave you good advice.

The parents of kids with diabetes are put under a lot of pressure these days.  I was diagnosed back in the 1970's and took just one shot of long acting insulin a day.  It wasn't ideal, but I'm glad I've had all these years to learn about insulin, carb counting and all the other stuff people with diabetes now do.

Don't put yourself under pressure to be perfect.  It's impossible with diabetes.  You need to visit with your doctor about how to fit diabetes management into your real life.  All of us with diabetes manage it differently, so you need to find what works for your family.  

If you're going to have tight control, you may want to check into getting an insulin pump.  They provide a lot of flexibility.  With shots you may have to lighten up on your control.  That may mean having higher blood sugar in the morning, but not having lows or having to test through the night.  

This is a weird example, but I always explain high blood sugars feel like a hang over... headachy, dry mouth, tired, sort of cranky but can manage.  Low blood sugars feel like you're drunk... brain stops working, bad motor coordination, say silly things, and have irrational emotions.  Sometimes I feel the highs and lows and sometimes I don't.  Sometimes my emotions are related to my blood sugar and sometimes it's not.

It's okay for toddlers to have higher blood sugars since they are so sensitive to insulin.  Just work with your doctor or certified diabetes educator and figure out an appropriate target blood sugar.  Has your doctor given you a correction factor to treat high blood sugars?

Can you see if you can get an exemption from the Delaware daycare law?  If your child does go to a medical daycare it's not necessarily a bad thing.  Kids are adaptable.  I grew up with an aunt who is my age who had Downs Syndrome.  Her delayed development didn't impede mine, her disability made me a more compassionate person who knows that people deal with all sorts of challenges.  

You sound like a really good mom.  Your child is alive and thriving, so you're obviously doing something right!  Just know you will learn as you go.  If you have time to skim some books, I really recommend the ones below.  

Kids First Diabetes Second: Tips for Parents a Child with Type 1 Diabetes by Leighann Calentine

50 Secrets of the Longest Living People with Diabetes by Sheri R. Colberg & Steven V. Edelman

Using Insulin by John Walsh

Pumping Insulin by John Walsh